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Accutane2X 10-27-2010 02:00 PM

My mom has hypothyroidism, Sjogren's and Lupus. Do these usually go hand-in-hand? I was just diagnosed with hypothyroidism (34 yrs old). What should I look out for? Does this/these run in families? Thanks.

Accutane2X 11-01-2010 12:12 PM

Re: Sjorgrens/Hypo?Lupus
So there is no one else that has sjorgrens who also has thyroid issues?

Bryansmom 11-01-2010 10:28 PM

Re: Sjorgrens/Hypo?Lupus
I have hypothyroid, systemic lupus, and sjogren's. Over on the lupus board there are many people who have lupus and thyroid. I personally think there is a strong link. I'm just a patient though!

I'd be happy to answer any questions you might have. I just recently found out I have sjogren's. Been dealing with lupus for almost 9 years now. The thyroid seems pretty well controlled by meds.

Take care,
Michelle in CA

AlexaIn2006 11-25-2010 10:57 PM

Re: Sjorgrens/Hypo?Lupus
What were some of your symptoms? I am curious because I have hypothyroid with Hashimotos and Graves antibodies and I think I *may* have Sjorgrens. The autoimmune aspect make me feel quite ill because of my immune system response to the autoimmune disease. I have been to many doctors this past year and everything comes back good so it is concluded it is all thyroid related at this time.

ANYWAYS, my neck glands hurt sometimes and when I showed my infectious disease doctor he mentioned those were my salivary glands. I experience a dry mouth as of late and drink a ton of water with no relief. Those are my symptoms and I am wondering if that sounds related?

Bryansmom 11-26-2010 04:18 PM

Re: Sjorgrens/Hypo?Lupus
Hey Alexa;
Sorry to hear you're feeling rotten. I'm not sure about the swollen glands; are you running any kind of temperature? Are you currently on thyroid replacement hormone, and if so how long have you been on it (and have you had a follow-up TSH level done?)
I remember when I was dx'd as hypothyroid...I thought I was dying. I was SO tired, and everything ached. Plus depression can be a symptom of (or be worsened by) having a thyroid that's out of whack.

I went about 4 years between the hyptothyroid dx and the lupus dx, but a total span of about 15 years between my first symptoms of lupus and a difinitive diagnosis of SLE. The Sjogren's has been a new development in the last 6 months.

Have you had an ANA run? That might be something you could request from your primary care dr. If that is positive, you would probably have a case to go to a rhuematologist. The painful glands would worry me. Get it checked out and be persistent. I came to a point where I didn't care whether or not the dr's thought I was a pest...I wanted answers. Educate yourself and be direct. Also I can't stress enough how important it is to keep track of your medical tests and records in a binder. It helps you keep a timeline of what's going on. It's especially helpful if you're seeing more than one specialist. I know that records nowadays are computerized mostly, but I still think it's nice to have copies of everything just for myself.

Don't know if I answered all of your questions. Do you feel better when you take advil or some other NSAID? Forgot to ask about that.

Take care and hit be back if you want to talk more!

Michelle in CA

AlexaIn2006 11-26-2010 04:32 PM

Re: Sjorgrens/Hypo?Lupus
Thanks for the response. I am very active in my health and knowledge with my thyroid autoimmune disease. I get copies of all of my labs and I have learned how to interpret them. My last TSH was 1.9 and I take Amrour. There has always been talk that I may have something else going on but nothing has ever come back to show it. I literally has at least 50 tubes of blood taken from me this year. Sed rate. and ANA, etc. have all been normal. I don't like to take drugs so I don't take any Advil or Tylenol or anything of that sort. I would rather deal with it than take a pill to be honest, that's just me. I keep track of how I feel and I type it up for the doctors when I go in. My only guess is that if something else is going on, it hasn't been a long time in the big scheme of things and it may take some time to show up on labs? I know everything doesn't always come back positve even if you have something, but I was pondering whether or not I should approch my regular doctor about this or not at this time. I am getting tired of having my blood drawn and going to appt's just to be told everything's perfectly fine. I am only 28 years old and I feel like junk, so I KNOW that is not normal.

Bryansmom 11-26-2010 06:09 PM

Re: Sjorgrens/Hypo?Lupus
When you say you "feel like junk," what specifically do you mean?

Even if you are diagnosed with something besides thyroid disorder that is autoimmune in nature, the treatment will be medication. So you have to decide if you are feeling badly enough to want to get some relief from it. I totally understand the desire to know if your symptoms have a name, or for that matter, what to expect next. Many diseases like lupus or sjogren's are quite frankly a waiting game. It may take years to get a difinitive diagnosis.

I do hope you are able to get to the bottom of things. Knowledge is power. Best wishes!


AlexaIn2006 11-28-2010 07:04 PM

Re: Sjorgrens/Hypo?Lupus
Junk means I am extremely fatigued, my body aches like I have the flu and I generally feel flu-like. The intensity waxes and wanes, but it is always there.

Bryansmom 11-29-2010 04:18 PM

Re: Sjorgrens/Hypo?Lupus
That's honestly the way I describe what having lupus feels like...that feeling like you have the flu, achy, tired beyond reason...

If you've had your thyroid under control for a while I'd maybe push to see if your dr would run any other tests.

It took several years of going to the dr and being brushed off before I got some answers. Then it was like....oh, I guess there was something going on. Hang in there!


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